Hi, I'm new here! Does anyone relate to what I am sharing in this thread?

Hello everyone!
I have decided that I need to take a self diagnosis of Aspergers after 7 years of reading about the syndrome and having light bulb moment after light bulb moment that explains why I have felt the way I have for as long as I can remember in my life. I'm now 33 and finally can make so much more sense of my past.

I want to share something I wrote a few months back when I was particularly stressed and at the same time finally found a way to put some of my feelings into words.

Here goes:

Some days it’s because I’ve acted being a “normal” person for just one hour too long and just can’t keep it up any more. The computer says NO...I blue screen.

I can’t speak. I might want to...my head has it all lined up, but the connection between head and mouth is down.

I can’t answer a question...that requires processing what you’re saying to me, but I just heard meaningless noises so can’t.

I can hear every little sound...I am hyper aware...I can’t filter it out...so I get out the headphones and the thing I listen to that is MY choice helps the other noises be less intrusive. Some sounds though make me want to rip my hair out and bash my head against a wall, sometimes I end up punching my own head just to make the feeling go away. I’m scared I might give myself concussion one day.

 

My flight or fight is on high alert. Everything is a threat.  Approach me or suddenly expect me to focus on something you’re saying and I feel under attack...I panic...I haven’t got the capacity to understand what you’re talking about. It’s just that confusing noise again.

I’m not looking at anyone because that’s too hard...that’s another exchange of data that has to be processed and I’m not doing that at the moment.

 

Maybe you’ve noticed I’m nodding my head repeatedly...or moving my feet...or rubbing something...when you “threaten” me I flap or knock on something or appear to be flailing at the air...those movements happen a lot in much smaller ways a lot of the time, they mostly help release tension, they are an outlet to the endless assault the world makes on me, an assault I have spent years learning to adapt to so I don’t act weird around other people. I get told quite often even now that I act a bit weird when out and about. I know I’m being different, I’ve always felt like I’ve been doing it all differently. I’m mostly trying to copy you and others around me...bound to be weird when you’re taking bits of everyone else and putting them together in an attempt to be “normal”.

 

I’ve spent too long remembering to make eye contact, to smile, what to say and do when outside the house, in shops, on the phone. The script isn’t something I’ve learnt and can throw away. It’s a constant in the back of my mind. Any communication of any kind means I have to find the right scenario and run through how to do it and hope the person on the other end doesn’t deviate from their role.

You know those days when your phone apps seem to do everything on a go slow, when your laptop just seems to be struggling to load even the simplest of programmes, when the internet seems to have reverted to dial up, when the screen pixelates and information is getting scrambled and files are corrupting...that’s me when you perceive my temper shortening, my patience wearing thin, my attention span dipping, my tolerance decreasing...I’m shutting down, slowing up, starting to panic that someone might need me to do something more than the immediate task at hand. I can only focus on one thing at a time, and that feels like I’m doing it through a fog.

Thankfully I don’t have to always feel like this. I can reboot to a semblance of normal again...somewhere in my head while I’m falling to bits there’s something else getting on with the filing, getting the scripts back in order, defragging , emptying the caches, clearing the cookies and fixing the broken connections, maybe kicking the modem too! But I need to do that reboot alone...where I feel safe and unthreatened.  It might take hours, it might take all day, it might take longer, I might reappear before it’s finished and still be a bit phased out...sorry, I feel my obligations to everyone very strongly and feel guilty when I can’t fulfil them. I think I let people down a lot. I’ve been called selfish and snobby and stuck up, unfeeling, uncaring, distant, unfriendly, strange, weird, unapproachable, blunt, rude, antisocial, and all kinds of similar things when I’ve been trying to act normally before I’ve got my brain’s filing cabinets reordered.

It’s tiring being me...and I’ve been me for what feels like a very very long time, as long as I became aware that I didn’t feel like I was like other people. I started writing scripts in my head so long ago it has become a kind of second nature. If there’s advice being given on how to do something, how to act, if I read something somewhere I file it away...I can use that to fit in.

 

Some days I’m doing all that with the added bonus of legs that hurt like they’re on fire to their very core. With a fog in my head so thick it’s like trying to think with scrambled eggs, with arms and hands so weak that I appear clumsy. I forget things, anything, everything. I get other stuff mixed up, I lose track of conversation, I can’t find my words, I look even more stupid.  ME feels very different...they’re two distinct things I’m dealing with.

Sometimes I just need to cry...all the feelings of uselessness and hopelessness and being so very tired of it all get dissolved and let out in my tears. I can’t put it into words out loud, it’s all too big. Too scary to hear for real.

My husband read the above for the first time last night and says it has helped him understand some of my behaviour and he wants me to see about getting a formal autism diagnosis if possible in the new year.

Interested to find out others thoughts on what I have shared. Thanks.

  • Hi, Beaky.

    Not sure how I came across this thread as it appears 3 months old.

    I’m also 33 years old but male ... and that would be the only difference.

    I wouldn’t change a word in your post and I really mean that!

    I’m really thankful for what you have put into this post it may help me to explain how I feel to my family.

    I wondering: How are you getting on? Did you pursue the diagnosis? 

    Thank you for sharing.


  • Thank you. And Hi, nice to "meet" you!

    Likewise :-)


  • Thanks for all this info Deepthought, it’s really helpful. It’s my bedtime reading for tonight. I have experienced good results from taking care of my diet and certainly according to Ayurveda, gut health is crucial to overall health, which is not merely the absence of disease. The body goes through many stages before it reaches disease. 


  • Beaky1804 wrote:

    Wow...that linked article fits what I was like about 12 years ago! I have a lot less fatigue issues these days of such all body consuming severity.


    There are a couple of articles that could shed further light on things regarding oxidative stress in respect to Autism, ASD, Asperger's Syndrome, etc., in the first article as being a more technical 'heavy-weight' read, and Aphasia (particularly Anomic Aphasia amongst others) in respect of the communication blocks, which is a far more light-weight 'easy-read' article in the second case, as follows:


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1513329/

    +

    https://www.aphasia.org/aphasia-definitions/


    The big problem with being stressed is the resulting build up of free-radicles and toxins in the body, which kills off vital bacteria colonies that are essential to a wholistic body-mind relationship.

    Obviously staying hydrated and well rinsed with water is fundamental, so urine with a hint of yellow is really good, as is repopulating the bacterial colonies of the intestines, which has also proven to help keep things in balance ~ psychologically and physiologically.

    Have a read about 'gut-flora' stuff via the following link:


     https://www.medscape.com/viewarticle/874970


    I got into taking Bio-Kult Advanced multi-strain 'gut-flora' formula this last year, along with Activated Charcoal Capsules more recently as being a major antioxidant, and so doing has mellowed the painful nervous infernos and urticaria (stress induced rashes and hives), and the intensity of the old 'treacle' or 'fog' brain thing has mellowed along with it too ~ being more a metaphorical syrup and mist thing now.

    Another really good antioxidant session to minimise the hypertension-hypersensitivity issues involves Glutathione rich foods, such as are featured in the following link.


    http://www.immunehealthscience.com/glutathione-foods.html


  • Wow...that linked article fits what I was like about 12 years ago! I have a lot less fatigue issues these days of such all body consuming severity.

    My depression and M.E. diagnoses have never felt like the whole picture or explained my "since as far back as I can remember" problems. Social problems and the way I am clearly gifted and inteligent but struggle to find ways to let those talents shine in "normal" life.

  • Yeah, I relate. Well said. It’s difficult to put into words but you’ve done a good job. I could add to the list, I bet we all can but yeah, welcome to our world :-) 

  • Thank you. And Hi, nice to "meet" you!


  • Beaky8401 wrote:

    Hi, I'm new here! Does anyone relate to what I am sharing in this thread.


    Hi there, I was also new here about this time last last year myself, which was then a year and half after having been diagnosed. As far as "relating to" your description of things ~ I was so very much more "identifying with" (or experientially 'me-too-ing' with) what you have so very well indeed written and analogised.

    With your husband wanting you to see about getting a formal diagnosis of autism, if you telephone the NAS helpline on: O808 800 4104, and select option 4 (To request an information pack to be sent), and leave a message asking for an Adult Asperger's Syndrome diagnostic information pack, and give your name and address, you should have one a few weeks or so later ~ which will give you pretty much all you need to know about the basics of your condition, getting a diagnosis and your rights in so doing and all that.

    Keep in mind too if you go through your GP and the NHS ~ it can take years to get a diagnosis, and that is of course providing your GP and Local Health Authority have the funding to make the referral in the first place.


  • Problem with empathy, I forgot to add that lots of symptoms may be the same, but underlying cause totally different. 

  • I took a questionnaire on ASD from the internet. This basically just tells you if you see the symptoms in yourself. What's impossible to self-diagnose is problems with empathy. Theory of Mind... In the diagnoses they also measure your IQ and determine if all aspects of your intelligence are 'in sync'... with me it was obvious that my memory and processing time were just average, where the rest (verbal/strategic thinking) was above normal. I translated that to the 'broken graphical card' that the processor makes up for... Also problems with seeing the bigger picture and getting bogged down in details... 

  • I think having been diagnosed with M.E./CFS 14 years ago has helped me learn the art of down time!

    Thanks for the reply.

  • Hi, thanks for the welcome and reply!

  • The computer-analogy is very recognizable, making mistakes against unwritten rules of society and changing the brain-script so next time it will go smoother. Sensory overload... running a brand new game with cool graphics on an old computer without graphical card Slight smile ... it runs, but hampers because the main processor does all the work... and crashes once in a while...

    I think downtime is the only cure for us. Sundays with nothing planned. Walking the dog along the same path every day... 

    Find a passtime that makes your brains purr. 

  • Hi Beaky,

    Yeah... that all makes sense to me.

    Much more I could say... but that about says it!

    Welcome to our world!

    Tom